Ellie Rapp is Founder of the Safe Sounds Project
Q. Your personal journey with misophonia seems to deeply inform your work. How has your lived experience shaped your approach to organizing the annual Misophonia Conference and founding the Safe Sound Project?
A: The things that have taught me the most along my journey with misophonia have
been the times that were the hardest—I was forced to learn how to adapt, how to
live my life to the same capacity as other people around me. I have had to battle
my way through a lot of issues that people without misophonia don't typically
need to put up a fight with.
This has made me much more resilient and driven: I look back on the hardest times and I realize that I got through them. I'm here now. And I learned so many different things from those times to get me exactly where I am today! So, for the conference and my organization, those hard times were crucial in the way I crafted things and what I wanted the message of my work to be.
I'm definitely not the only person in the world that has felt these tough, heavy
emotions, and when I was going through that as a teen, this is what I would have
wanted. I felt like nobody in the world was listening (or even if they did, nobody in
the world understood), so I've shaped these things to be as comforting as
possible because I think that's what many people (especially younger people) with
misophonia look for—and they don't often get it, especially not from websites or
people they might just meet at a conference in Atlanta.
Thankfully, the feedback I've gotten has been very positive. I'm just going to continue to use that same approach because it seems to be truly helpful.
Q. As a quadruple-major graduate with an impressive academic background in psychology, neuroscience, cognitive science, and chemistry, how do you leverage this multidisciplinary knowledge to address misophonia through your research and advocacy work?
A: Sometimes when people learn about my academic background, they ask about the
path to earning four majors. I give the same answer to everybody: I really like to
learn, and none of the majors that were offered fit exactly what I wanted (which
was to learn everything I can about misophonia!). So, I just took classes that
interested me.
Though I don't believe this is an efficient academic path, it certainly fortified my understanding of misophonia. I wanted to understand misophonia from as many aspects as possible, and this meant broadening my scope past my majors. I've taken prerequisite or elective courses ranging from Electricity and Magnetism to Elements of Surprise. No matter the class or academic experience, it all helped me understand the brain better, which is a necessary foundation for making progress in misophonia research and advocacy.
Even just with my own observations, having built the basis of knowledge I now have has helped me analyze the world around me in a multifaceted way—a critical step in becoming a better researcher, advocate, and thinker.
Q. You’re a Research Coordinator at Western Psychiatric Hospital. How do you see clinical research, particularly at institutions like UPMC, advancing our understanding of misophonia and its relationship to mood disorders and suicidality?
A: Clinical research is, in my opinion, one of the most powerful methods we can use
to understand misophonia because it quantifies the qualitative. That's a really
tough thing to do!
Much of misophonia is qualitative. It's emotions, it's feelings, it’s reactions… and if we are able to combine our qualitative observations with analytical techniques, we can get closer to understanding the source and mechanism of misophonia.
This is equally crucial for mood disorders and suicidality as well because, like misophonia, these are extremely qualitative topics. Further, all of these regions of interest rely on the experiences of people, which is why the “clinical” in “clinical research” is necessary. We can analyze trends and predict outcomes to learn how to harness disordered thoughts and emotions.
Even though it is slow, expensive, and time-consuming, clinical research is the best way that we can fully understand the intersection of misophonia, mood disorder, and suicide.
Q. What challenges do you face when communicating the complexities of
misophonia—both as a neurological condition and an emotional experience—to the
broader public and healthcare professionals?
A: One of the biggest issues that I've had when explaining misophonia
psychologically, neurologically, or emotionally, is that many people do not
understand its severity.
In conversations I've had even with academic experts, sometimes nothing I can say will convey how intense and unavoidable the reactions to triggers/activators are. One of the “tricks” I like to use is to explain misophonia like it is an allergy (in this case, a sound allergy) because it evokes an involuntary bodily response triggered by external stimuli.
Using this terminology is a great way to emphasize its severity and involuntary nature to people who otherwise would not understand that. You would be surprised—it's not just the broader public. It's healthcare professionals, psychological experts, neurological
experts. The lack of awareness is a universal issue, but much effort has been
made to make the issue temporary.
Q. As a co-coordinator for the Teen Track at last year’s Misophonia Convention, you’ve worked closely with young people living with this condition. What unique challenges do teens face, and how can families and schools better support them?
A: I was very disheartened when listening to the stories the teens were telling me at
the convention—primarily because I was a teenager not too long ago, but long
enough for the world to empathize with these individuals more than it did before. I
did not expect their experiences with loneliness, guilt, and isolation to parallel my
own because, again, I expected change.
People experience these feelings regardless of age, but it is especially difficult for teens because of what typically occurs in that period of life. Sadly, it’s not uncommon for younger people with misophonia to experience bullying and targeting at school. Some kids might not grasp those concepts because their brain isn’t fully developed yet. Obviously, that is no excuse for cruel behavior, but it may explain why those teenage years are particularly painful for young misophones.
I think one of the best way for families to support their teens is to simply pay attention to them. Not necessarily undivided, one-on-one attention, but making note of their behaviors: how long have they been by themselves today? If they have to isolate when you're eating dinner, make up that time in whatever way you can. I guarantee you that those teens don't want to be away from their family for that long. Sometimes when you
come home from school, the only thing you want is someone to be with you.
Try to find ways that you can be physically proximal with your teen, and be mindful
when making adjustments to your household (whether that's changing things you
eat, making new traditions, etc.).
Another large complaint that I heard from the teens was school being a dangerous place. Despite having 504s or IEPs, teachers, faculty, and peers would not always abide by these regulations. This leads me to believe that schools and their disability coordinators don't understand misophonia and/or have not made a complete effort to understand it. These kids are not getting the same quality of education that their peers are for a reason that is completely out of their hands. Everyone deserves the chance to have a good education, and when a school takes away a young misophone’s chance, you're automatically cultivating hopelessness, isolation, and ostracization. What else
should they feel when even their disability coordinators won’t help them?
Most of these issues boil down to others not taking misophonia as seriously as they
should. I hope in the future that schools and parents begin to recognize misophonia as something that can’t be tucked away or left at the classroom door. It's something that teens carry with them, as well as all of the guilt and isolation
that may accompany it.
Q. The Safe Sound Project aims to create safer environments for people with sound
sensitivities. Can you tell us more about its mission and the tools or resources you’re
building to help individuals navigate daily triggers?
A: The Safe Sounds Project was created as a way for younger people with
misaphonia to express how they're feeling, their journey with misophonia, and ask
questions without the fear of misunderstanding. It's a platform or starting point for
conversations between younger people that will help them feel less alone.
Like I had mentioned earlier, my intentions for my organization are heavily influenced by
my own experiences: this is one of the things I wish I had as a teenager. I likely
would have been more in-tune with myself if I were able to simply talk about what I
was going through without having to explain myself.
And so, the goals are to get conversations started about the misophonic experience and provide a robust assortment of resources/tools that misophones and their families can use whenever and wherever.
Looking ahead, it would be great to have some sort of need-based scholarship for noise-canceling headphones or earbuds for misophones who aren't able to afford them. Effective noise-cancellation technology is not cheap, and not every family has that kind of money to spend. No teen with misophonia deserves to live without things that can protect them from their triggers/activators.
I would also love to start a Safe Sounds Project scholarship for people with misophonia. I want to empower and encourage college-bound misophones by providing the funds necessary for certain accommodations that may be costly (e.g., solo housing). More than anything, though, I want these teens to know that even in their loneliest moments, they’ve got a whole army of misophones in their corner.
Q. Given your passion for research and community involvement, where do you see the future of misophonia research headed, and what gaps currently need urgent attention?
A: The future of misophonia research is headed in a really promising direction. I
think it's finally starting to get some of the attention it deserves. It's not quite
where I think it should be, though.
I would like to see some more funding towards researchers that are actively studying misophonia. But, to me, the gaps that need urgent attention don't necessarily have to do with research topics but rather who is trying to bridge the gaps. I am part of the Lived Experience Advisory Panel (or, LEAP), which is part of soQuiet Misophonia Advocacy.
The point of LEAP is to review research—publications, IRB submissions, or even mock-ups of possible studies—to ensure that it is in alignment with the lived experiences of people with misophonia. One thing that I find reassuring for the future is knowing that there are researchers that have a personal connection to misophonia, whether that's
having misophonia themselves or a loved one with misophonia.
Those individuals have experienced real-life implications of misophonia and truly understand how much misophonia can affect the lives of many. While such experiences may not be completely necessary in order to grasp the concepts of misophonia, I believe
this personal connection informs the decision-making in research processes.
A personal link between research and real-life experience lets me know that not only
do these academics understand the multifaceted hardships misophones experience, but they also intertwine their research with what they have learned from their own experiences.
Q. What emerging technologies, therapies, or tools do you think hold the most promise in improving the lives of those with misophonia? Are there any you’re particularly excited about?
A: It's hard to say what holds the most promise because what works for some people
doesn't work for others.
I think one of the things that has helped me the most is having a therapist with knowledge of misophonia prior to my time with them. My therapist in particular aims to have their clients accept themselves exactly as they are. Once I was able to do that, I felt much more in control of my life and I was able to navigate my misophonia with much more ease.
I think technologies like noise-cancelling earbuds, headphones, and hearing aid technologies are really exciting. The technology seems to become more noise-cancelling every year! I believe here's some work being done in Canada with in-ear devices to filter sound. I don't know too much about it, but I know that it's happening—and anything that aims to improve the lives of people with misophonia is something I'm excited about.
Q. Looking ahead, what excites you most about the future of the Safe Sound Project, your research career, and the misophonia community overall?
A: It's hard to say what's most exciting for the Safe Sounds Project because I think
there are endless paths that lead to the ultimate goal: building a community. So,
any sort of progress (whether that's more people visiting the site or finding new
resources) is exciting to me.
My research career excites me because I'm at a turning point: I'm between completing my undergraduate studies and the eventual start of my PhD program. I'm excited to have the opportunity to answer my own research questions by designing studies—this has been something I've been working towards for so long.
And when the day comes around that I have the ability to do exactly what I’ve dreamt of for years, it’s going to be one of the greatest feelings a human can experience. What excites me most for the community is just that it's growing. Not because more people are getting misophonia, but because more people are talking about it and discovering that they have it in the first place.
None of this would happen without the efforts made by misophonia advocates that are beautifully, tirelessly dedicated to helping their people. The more discourse we can have about misophonia, the more that we can work towards finding ways that misophones can live the fulfilled lives they deserve.
Q. If you could offer one piece of advice to someone newly discovering they have
misophonia, what would it be?
A: It's reeeeeeeeeally hard to offer just one piece of advice because there's so many
different things I could say!
But, I think what would have helped me the most when I newly discovered my misophonia would be that other people have this, too—and people my age.
I think the hardest part of having misophonia for a lot of people is loneliness, and especially with younger people. Misophonia can be one of the most isolating disorders someone can have, and simply knowing that you are not the only person on earth going through this can change your life.
Maybe it’s not the fact that there are other people that understand me, but that there were people that understood me the whole time (and people who will understand, too). I
just didn’t know it yet!
Resources and Links:
The Safe Sounds Project: https://safesoundsproject.org/
Ellie Rapp's LinkedIn: https://www.linkedin.com/in/ellierapp
NPR article "Misophonia: When Life's Noises Drive You Mad" with Ellie Rapp: https://www.npr.org/sections/health-shots/2019/03/18/702784044/misophonia-when-lifes-noises-drive-you-mad
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